Hi, not been on for months, I need some help.
 

Hi everyone, how are you? I hope everyone is as ok as they can be. I've not been on the forum for months as I've been having a hard time coming to terms with being stuck in a wheelchair. For anyone who doesn't remember me; I've had RSD since 1996, I have it in all of my left side and my right leg, leaving me only the use of my right arm.

I went to the podiatrist's last week & I now have to have 3 toe nails removed due to my RSD, as my feet & legs have 'curled' so have some of the nails. I'm dreading having this done as I'm so worried that it'll upset my symptoms & give me yet another flare up. I've had just over a year of constant flares & it's just starting to calm again now. Has anyone else had this done? Did it cause problems for you too? I know I have no choice about getting it done because of the problems they're causing with additional pain, infections, etc, but it still bothers me, so if I could have some advice I'd be grateful.

Hi cinders! I have not had this issue with my toenails, but I just wanted to say that I am sorry for what you are facing. I have had RSD since 1991 and have developed it in both feet last year. It is getting harder and harder to walk so I fear that the wheelchair is coming sooner than I thought it might. I can't use canes or a walker because I have RSD in both hands, shoulders and left arm.

It sounds to me that it is something that you need to have done, you just have to be comfortable with your decision and the doctor performing the procedure. If it will relieve some of your pain (after you heal), then I would have it done sooner than later...but that's just me.

Good luck to you!
Nanc
:hug:

I had this issue with the toe nails on my left foot (where my RSD started). I had to have the nail removed because it was causing more damage and infection the way that it was. I was worried about it but the bottom line was that the damage it was causing was far worse trauma than having the nail removed. It was a relatively painless process (at least compared to the RSD) and while I needed to be careful with it for a while until the nail grew back in I didn't have any complications from the procedure.

Hi Cinders, so sorry to hear of your foot-toenail issues. Sounds like you are saying a 'no choice' issue. I've read on this forum and other info on rsd that loading up on vitamin c is a 'preventive' measure. For myself, I would do that right away before and after procedure. Also, could you talk to your doc about giving you something pre-surgery to relax your body and mind. Like I do the 'laughing gas' before any dental procedure. My dentist also gives me antibiotics prior to any dental procedure. Maybe you are already on antibiotics with nail infection issues. Hope the best for you. Let us know how you are doing and when you are scheduled. will be thinking of you- loretta I've had rsd like yourself since 96-both legs, arms, full body

Hi, thanks, do you know what level the vitamin c needs to be? I'm on 500mg a day at the moment, consultant is hoping it will prevent a little of the spread in my right side. The podiatrist is just waiting for confirmation to proceed & she's going to do it..... ugg:eek: Yes I frequently on antibiotics, both due to the toes & I keep getting leg ulcers. In March I moving into a purpose built bungalow, I got accepted onto a scheme they're running, so I'd like it over & done with by then so I can enjoy the new place :)

Did it take time to heal? Sorry I should've said thanks for the reply 1st, but I'm dreading it being done! They say they're going to kill the nail bed with a chemical once it's removed :confused:

I think it was a week or so where I had to have it wrapped and couldn't wear a normal shoe. After that a simple bandage and regular shoe for a little while. It took months for the nail to grow back but after about 2 weeks (I think) it wasn't sensitive to the touch anymore.

I don't remember anything about chemicals to kill the nail bed...they gave me a shot to freeze the toe before removal...that was the worst part of the whole procedure for me. They did put some sort of goo on my toe after removal...I thought it was just liquid bandage or something like that but I guess it could have been something that killed the nail bed...I didn't ask and wasn't told about it beforehand.

Help
 

In his paper on page nine he says the movement disorder is treatable ...how?

Ty
Deb

Debbie

Have you possibly posted this on the wrong thread? I assume you are asking about the document that Daylilyfan kindly posted the link to? If you are, then the only reference made to treatment of CRPS related movement disorders made directly in that document is in section 6.3 which only mentions treatment with baclofen and tizanidine.

Cinders, Vitamine C=I personally would take 1000mg. For RSD I've read 500=1500mg. So personally I would take the high dose before and following procedure. Hope the best for you and keep us posted how you are doing please. loretta I've had the ulcers and they are soooo painful and not fun. take care:)